S P E C I A L I Z E D P E D I ATR I C S E RV I C E S R E V I E W REPORT OF THE MINISTER'S ADVISORY COMMITTEE
April 2002
TABLE OF CONTENTS SECTION I: EXECUTIVE SUMMARY .................................................................. 3 SECTION II: INTRODUCTION .......................................................................... 6 SECTION III: SPECIALIZED PEDIATRIC SERVICES REVIEW COMMITTEE ..... 8 (i) (ii) (iii)
Terms of Reference.............................................................................................. 8 Work Plan ........................................................................................................... 8 Process ............................................................................................................... 9
SECTION IV: HSRC REPORT -- HIGHLIGHTS AND RECOMMENDATIONS...... 10 SECTION V: OTHER JURISDICTIONS............................................................. 13 SECTION VI: TERTIARY PEDIATRIC CARDIAC SURGERY ............................. 15 (i) (ii) (iii) (iv) (v) (vi) (vii)
Data Considerations ........................................................................................... 15 Provincial Context .............................................................................................. 16 Site by Site Volumes of Cardiac Tertiary Pediatric In-Patient Surgery ...................... 18 Key Observations and Trends.............................................................................. 21 Key Considerations............................................................................................. 23 Tertiary Pediatric Cardiac Surgery Recommendations ............................................ 26 Strategies to Improve the Networking of Pediatric Cardiology and Tertiary Pediatric Cardiac Surgery in Ontario.................................................................................. 28
SECTION VII: PEDIATRIC TRANSPLANTATION PROGRAMS ......................... 30 (i) (ii)
Provincial Context .............................................................................................. 30 Pediatric Transplantation Program Recommendations ........................................... 31
SECTION VIII: FUTURE OPPORTUNITIES for COORDINATION OR CONSOLIDATION OF SPECIALIZED PEDIATRIC SERVICES............................ 32 (i) (ii)
Guiding Principles .............................................................................................. 32 Potential opportunities to be explored.................................................................. 32
LIST OF APPENDICES...................................................................................... 36
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SECTION I: EXECUTIVE SUMMARY On November 5, 2001, the Minister of Health and Long-Term Care called for a provincial review of specialized pediatric services. This report provides the findings and recommendations of the Specialized Pediatric Services Review Committee (SPSRC), the provincial committee formed to provide advice to the Minister. The SPSRC included representation from the province’s five academic health sciences centres (AHSCs) with specialized pediatric programs and the Ministry of Health and Long-Term Care. This report provides a review and recommendations for the future delivery of pediatric cardiac surgery. As well, preliminary recommendations on pediatric organ transplantation are provided based on the information currently available. The report builds on the considerable work done in the past on this topic, including the Health Services Restructuring Commission’s (HSRC) provincial review of specialized pediatric services. The HSRC’s report has been used by the SPSRC as a reference point for its work. The HSRC’s major recommendations included: consolidation of pediatric cardiac surgery at The Hospital for Sick Children (if Children’s Hospital of Eastern Ontario is unable to attain 200 annual cases); consolidation of kidney, heart, lung, and liver transplants at The Hospital For Sick Children for patients under 15 years old; and establishment of a pediatric coordinating group to develop guidelines to include minimum volumes for critical mass. The SPSRC updated the HSRC’s data and analyses, which was based on 1995/96 data, to provide a current context upon which to base recommendations for the future delivery of tertiary pediatric cardiac surgery and pediatric transplantation services. Several jurisdictions have recently studied specialized pediatric services, especially tertiary pediatric cardiac surgery. Section V provides an overview of information from Winnipeg and Bristol, England. As well, several recent research articles are highlighted. A recurring theme across jurisdictions is the positive relationship between volumes of procedures and favourable outcomes. Highlights of the key observations and trends for pediatric cardiac surgery include: • • • • • •
The incidence of congenital heart disease is expected to remain the same over time. The total number of surgeries is declining given that multiple interventions are now completed during one operation. The update to the HSRC analysis reveals a 12.2 % decrease in tertiary pediatric cardiac surgery between 1995/96 and 2000/01. (0 to 14 age group, excluding neonates) There does not appear to be any new data or research to support a change to the HSRC recommendations. CHEO’s tertiary pediatric cardiac surgery cases have decreased since the HSRC review. LHSC’s decision to discontinue tertiary pediatric surgery is consistent with national and international research and trends and supported by a province-wide review of the number of children requiring cardiac surgery.
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Consideration of updated province-wide information, national/international trends, and current research led the SPSRC to make the following recommendations for the delivery of pediatric cardiac surgery in Ontario: (1) To ensure best outcomes, a coordinated system of tertiary pediatric services is required in the province and includes both surgical and medical services. The five academic centres should build on the experience of the SPSRC and commit to closer, collaborative relationships to effect this change and ensure access to specialized care. (2) Tertiary pediatric cardiac surgery should be centralized on one site with a targeted implementation date of April 2003. The recommended site is The Hospital for Sick Children. (3) Given that current medical practice recommends on-site surgical back-up for interventional catheterization procedures, pediatric cardiology using these methods, including immediate post-operative intensive care, should also be centralized at the same site, unless otherwise agreed to by members of the pediatric cardiac network (a medical forum proposed by Chairs/Chiefs not yet established). (4) The five AHSCs will collaborate with the Ministry of Health and Long-Term Care to make further recommendations on the provision of supports for families traveling greater distances for tertiary pediatric cardiac surgery. (5) To support the tertiary pediatric surgery program transfer and consolidation of these services on one site, a regional model for pediatric intensive care, including preoperative and post-operative care must be developed. (6) Pediatric cardiac specialists in a tertiary pediatric setting should undertake tertiary pediatric cardiac surgery involving neonates and the 0 to 14 age groups. (7) The single site must be capable of providing service in both Official Languages. For transplantation services, the following recommendations were made: (1) The Hospital for Sick Children should continue to be the sole provider of heart transplantation services for the pediatric population. (2) The Hospital for Sick Children should continue its role as the sole provider of kidney transplantation services for children aged 0 to 14 years, recognizing that London provides kidney transplantation for the 15 to 18 age group. (3) The SPSRC does not recommend a change to the delivery of liver transplantation services at the HSC and LHSC at this time. Program consolidation however, may be a future consideration for review by the proposed Specialized Pediatric Coordinating Council when it is established. (4) All other pediatric solid organ transplantation (e.g., lung, small bowel) should continue to be solely provided at The Hospital for Sick Children. The referring centres will continue to offer pre- and post-surgical transplantation care in a coordinated manner. (5) The proposed SPCC should give future consideration for a more in-depth review of provincial transplantation services with respect to considerations of quality of care, best outcomes and critical mass and pre- and post-surgical care. This review should extend to all hospitals offering pediatric transplant services. Although the SPSRC process focused on provincial data, current research, and the expert opinion of the physician committee members, it also provided an opportunity for a group of 4
concerned citizens from Southwestern Ontario to meet with the SPSRC Chair and the SPSRC’s London Health Sciences Centre representatives. The Southwestern Ontario Pediatric Parent Organization prepared a written submission, which was received and tabled with the SPSRC. Their submission expressed concerns with access and quality of care related to specialized pediatric programs, particularly the effect on residents of Southwestern Ontario caused by London’s pediatric cardiac surgery program moving to Toronto. The SPSRC felt that the input was important and helped to make recommendations that take into account the impact on children and their families posed by traveling significant distances from home to receive highly specialized pediatric services. To improve quality of care and health outcomes for Ontario's children, the SPSRC recognized the importance of strengthening the current delivery of care. To strengthen pediatric cardiac care, the five centres need to work together as a pediatric cardiac system, to utilize each centre in an appropriate role in the care of pediatric cardiac patients - this led to the recommendation for a regional model for pediatric intensive care, including pre-operative and post-operative care. Within this model, the lowest mortality rates and therefore, best outcomes will be ensured with the consolidation of the surgery component of pediatric cardiac care. The report concludes with the recommendation for the creation of a Specialized Pediatric Coordinating Council (SPCC) for hospital-based specialized pediatric services. The SPCC would be advisory to the Ministry of Health and Long-Term Care and would provide an ongoing focus on the provision of highly specialized, tertiary and quaternary services for children. Initial membership would include the five pediatric AHSCs and a representative from Northern Ontario.
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SECTION II: INTRODUCTION On November 5, 2001, the Minister of Health and Long-Term Care called for a review of specialized pediatric services in the province. This report provides the findings and recommendations of the Specialized Pediatric Services Review Committee (SPSRC). The CEOs and Academic Chairs/Chiefs of the five academic health sciences centres with specialized pediatric programs participated in the review. The centres are: Children's Hospital at Hamilton Health Sciences; Kingston General Hospital; Children's Hospital of Western Ontario at London Health Sciences Centre; Children’s Hospital of Eastern Ontario (Ottawa); and, The Hospital for Sick Children (Toronto). The Ministry of Health and Long-Term Care participated through the Assistant Deputy Minister and the Executive Director, Health Care Programs as cochairs. Also participating from the ministry were Regional Directors for the four regions above, and the Assistant Deputy Ministers of the Health Services and Integrated Services for Children divisions. The SPSRC focused on highly specialized pediatric services including cardiac surgery, and kidney, heart and liver transplantation. This focus reflects the following realities: these tertiary types of cases are the most complex, are delivered by only a few hospitals’, and have been previously reviewed by the Health Services Restructuring Commission (HSRC); the patient conditions addressed are life-threatening; specialized technology and skills and expertise are required to deliver services; and, patient outcomes have been studied. A further impetus for the review was that the London Health Sciences Centre (LHSC) had reviewed a number of its programs and took a decision to divest several programs including tertiary pediatric cardiac surgery and pediatric heart transplant. Since November 2001, LHSC has not provided tertiary pediatric cardiac surgery or pediatric heart transplant – this coincided with the loss of their sole pediatric cardiac surgeon. There has been considerable work done in the past on specialized pediatric services. From 1997 to 1999, the HSRC conducted a review of these programs in the province. The HSRC’s report, Coordinating and Consolidating Specialized Pediatric Services in Ontario, February 1999, was provided to the Minister. In its report, the HSRC recommended that pediatric heart, kidney and liver transplants for children under 15 years of age be consolidated at The Hospital for Sick Children (HSC), based on expert panel advice. It also recommended that tertiary pediatric cardiac surgery occur at HSC and Children's Hospital for Eastern Ontario (CHEO) and that should CHEO not achieve tertiary pediatric cardiac surgery cases of 200 annually, then consolidation of all tertiary pediatric cardiac surgery take place at The Hospital for Sick Children. (Further information on the HSRC process and recommendations is provided in Section IV of this report).
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The HSRC’s report has been used by the SPSRC as a reference point for its work. This allows for maximization of the considerable work completed to date. In evaluating the specialized pediatric services hospital system, the HSRC used data from the fiscal year 1995/96. The current review replicates the HSRC’s analyses and updates the data to include all years between 1995/96 and 2000/01. As well, the current analyses include two additional age groups, namely newborns (0 to 28 days old) and children aged 15 to 18 years. Reviewing the provision of specialized pediatric services is not unique to Ontario. Several other jurisdictions have studied and reviewed this issue recently. An inquest was commissioned in Manitoba in 1995 to review pediatric cardiac surgery in Winnipeg. In February 2001, it was reported that decisions were made in Denver, Colorado to change the configuration of pediatric surgery following a peer review of mortality rates. In England a major review was undertaken during 1998-2001 because of concerns with mortality rates in the pediatric surgery program in Bristol. The SPSRC decided it was appropriate to use the HSRC work as a guide to reviewing the current provision of highly specialized children's services in Ontario.
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SECTION III: SPECIALIZED PEDIATRIC SERVICES REVIEW COMMITTEE (i)
Terms of Reference
The terms of reference for the work of the SPSRC were developed as directed by the Minister of Health and Long-Term Care on November 5, 2001. The SPSRC was asked to use an evidence-based approach to review: relevant models/experiences in other jurisdictions, the work of the HSRC and updated data related to its report; and, the current specialized pediatric services at the five tertiary centres for opportunities for coordination and collaboration. The SPSRC was charged with formulating a set of recommendations to address the following areas: • Future configuration of specialized pediatric services • Programs requiring examination for potential to coordinate or consolidate through a network of pediatric services • Mechanism(s) for ongoing collaboration. The SPSRC confirmed the terms of reference at the first meeting. The full set is detailed in Appendix 2.
(ii)
Work Plan
The Work Plan's activities permitted the SPSRC to meet its objectives in the timeframe requested. The major elements of the workplan that the SPSRC deliberated in the five meetings included: • reviewing the previous work of the Health Services Restructuring Commission (HSRC) as it related to the provision of specialized pediatric services • reviewing updated data related to the HSRC's earlier findings and acquiring an understanding of this data and their trends in the current context. This was important so that the SPSRC could benefit from work already done and use it to assess the relevance of previous advice received • reviewing further data and information on outcomes • discussing key criteria for maintaining tertiary pediatric cardiac surgery services in the province • examining critical mass, specialized skills and models for tertiary pediatric cardiac surgery • developing recommendations for improving pediatric cardiac care and ensuring quality of pediatric transplant programs. In addition, the SPSRC identified a number of other potential opportunities for coordination or consolidation through a network of specialized pediatric services and recommended a mechanism that would ensure ongoing collaboration.
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(iii)
Process
The process began with the Minister's announcement that he would invite the leaders of province's pediatric academic health sciences communities to advise him on the provision of specialized pediatric services. The five meetings of the SPSRC occurred between December 20 2001 and March 5, 2002. All meetings and discussions were held in camera and all related material was transmitted on a confidential basis. This was a necessary requirement as the SPSRC was advisory to the Minister and it allowed the SPSRC to deliberate freely. Overall coordination was provided by ministry representatives from the Health Reform Implementation Team and the Toronto Regional Office. The process did not allow for submissions or reviews by external parties. The SPSRC Chair received a letter from the Southwestern Ontario Pediatric Parent Organization (SOPPO) based in London, Ontario. The written submission provided by SOPPO was tabled and distributed to all members for discussion and information. The SPSRC Chair also met with representatives of SOPPO in London accompanied by the President and CEO of LHSC and the Chair/Chief of Pediatrics from the University of Western Ontario. The mayor of London also attended the meeting. At the meeting, SOPPO representatives expressed their concerns related to the provision of pediatric services in London, including the cost of centralization, quality and provision of care, parental concerns and child and community issues. The SPSRC concluded its work in April 2002 and submitted its findings and recommendation to the Minister.
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SECTION IV: HSRC REPORT -- HIGHLIGHTS AND RECOMMENDATIONS In its review of hospital-based services in London, Toronto, and Ottawa, the Health Services Restructuring Commission (HSRC) identified the need to examine further, the provision of highly specialized, low volume pediatric services throughout the province. In 1997, the HSRC commenced a provincial review of specialized pediatric services. The review took 18 months. The HSRC submitted the report Coordinating and Consolidating Specialized Pediatric Services in Ontario to the Minister of Health and Long-Term Care in March 1999. Similar to the process used for other HSRC advisory reports, it was submitted as confidential advice to the Minister. The HSRC website continues as an archival resource only and contains many of the reports generated by the HSRC during its four years of work. The report mentioned above is now available by linking to the HSRC through the Ministry of Health and Long-Term Care's website at www.gov.on.ca/health. The HSRC report built on the recommendations of two groups the HSRC appointed, namely the Provincial Pediatric Task Force (PPTF) and an Independent Review Panel (IRP). The recommendations of the PPTF and IRP differ in several areas. The PPTF was established by the HSRC in July 1997. Its mandate was to review program activity of tertiary and quaternary pediatric services which had potential for consolidation, to recommend the programs and services that should be consolidated, and the preferred sites for service delivery. The PPTF membership included: Children's Hospital of Eastern Ontario; The Hospital for Sick Children; Children's Hospital at Hamilton Health Sciences; Kingston General Hospital; Children's Hospital of Western Ontario at London Health Sciences Centre; Windsor Hotel-Dieu; Thunder Bay Regional Hospital; Sudbury Regional Hospital; University of Toronto; University of Western Ontario; University of Ottawa; Queen's University; and McMaster University. In December 1997, the PPTF made its recommendations to the HSRC, which included: - existing configurations of tertiary and quaternary pediatric programs should be maintained; - expansion of some facilities; - a central provincial pediatric health network. After receiving the PPTF’s recommendation, the HSRC concluded that the mandate assigned to the PPTF had not been fully addressed. Specifically, the HSRC noted "the lack of conclusions about the need for appropriate critical mass and greater provincial coordination of highly specialized low volume pediatric services, could result in a lack of access to the best quality of care for these clients and potentially less-than-optimum child health outcomes". The HSRC assembled an Independent Review Panel of three physicians from outside Ontario to review the recommendations of the PPTF. The IRP identified opportunities for consolidation of two services: pediatric cardiac surgery and transplantation. For pediatric cardiac surgery, the review panel recommended consolidation at two sites: The Hospital for Sick Children and Children’s Hospital of Eastern Ontario. For pediatric organ transplantation, the IRP 10
recommended all kidney, heart and liver transplants for patients below 15 years of age be consolidated at The Hospital for Sick Children. The IRP also recommended a provincial coordinating group accountable to the ministry to address the need for coordination and integration of specialized pediatric care. The HSRC considered the advice of the PPTF and the subsequent recommendations from the IRP. As well, the HSRC reviewed the available literature on cardiac surgery and organ transplantation. For cardiac surgery, the HSRC stated that published reports in pediatric and adult cardiac surgery clearly demonstrate a relationship between low procedure volumes and higher patient mortality rates. According to the HSRC, only The Hospital for Sick Children met annual minimum volume requirements for pediatric cardiac surgery. For transplants, the HSRC cited research again to show positive relationships between the number of transplants performed by centres and patient outcomes. Risk of mortality is potentially higher in low volume centres than those performing a relatively high number for both heart and kidney transplants. Regarding concerns about the potential loss of local access that consolidation presents, the HSRC concluded that access to high quality care is a priority over local proximity. Greater benefit to children is provided by improved quality care resulting from consolidated services. This led the HSRC to the following recommendations: -
Consolidate pediatric cardiac surgery at two centres – The Hospital for Sick Children and Children’s Hospital of Eastern Ontario Increase the tertiary pediatric cardiac surgery cases at Children’s Hospital of Eastern Ontario to 200 cases annually and evaluate in 18 months – if CHEO does not achieve 200 cases then consolidate all pediatric cardiac surgery at The Hospital for Sick Children. Provide clinical rotations at The Hospital for Sick Children and Children’s Hospital of Eastern Ontario for the London pediatric critical care residents to address teaching program requirements at London Health Sciences Centre. Consolidate kidney, heart, lung, and liver transplants at The Hospital for Sick Children for patients under 15 years of age. Establish a pediatric coordinating group to convene an expert panel to develop guidelines for these procedures; the guidelines to include minimum volumes for critical mass.
The HSRC data (1995/96) has been updated and presented in provincial volumes and facilityspecific volumes are presented in Sections VI and VII of this report.
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Pediatric Coordinating Group The HSRC recommended a provincial coordinating group be established with a mandate as follows: • • • • • • •
Guideline development to ensure quality outcomes, minimum volumes for critical mass and possible consolidation of additional pediatric tertiary/quaternary services Providing expertise in evaluation of new procedures and technologies in specialized pediatric care Coordination of the development of outcome evaluation projects and standards of reporting Coordination of the development of information management systems for clinical information, outcomes and costs of pediatric care A collaborative network for directing patient referrals to tertiary centres Development of recommendations re the organization and coordination and planning of pediatric cancer services Review of transportation systems' ability to meet the needs of older pediatric patients and neonatal patients.
The HSRC recommended this group be accountable to the Ministry of Health and Long-Term Care, be supported by the Institute of Clinical and Evaluative Sciences (ICES) and establish partnerships with appropriate providers and other pediatric service organizations.
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SECTION V: OTHER JURISDICTIONS As noted earlier, a number of jurisdictions have reviewed the provision of specialized pediatric services. As well, the relationship between volumes of procedures and favourable outcomes has been studied in the scientific community and published, although the quality of evidence is not as high as the SPSRC would have desired. The SPSRC refers to the HSRC's report for references on this topic. The SPSRC notes the following recent studies and events as an important context for its deliberations: The Pediatric Cardiac Surgery Inquest Report was published in 2000 after the completion of the Chief Medical Examiner's inquest from 1995-1998 into the deaths of twelve children who underwent cardiac surgery in Manitoba. The inquest report concluded that: "The available information suggests that the limited number of cases that can be undertaken in a province like Manitoba, with a population just over one million, represents an increased risk of morbidity and mortality, particularly in the case of highrisk surgery. Even if the catchment area were expanded, the base population would still not be large enough to support a full service program. The Inquest recommends pediatric cardiac surgery be re-initiated in Manitoba only as part of a regional program in Western Canada." The Manitoba program has since formed part of the Western Canada specialized pediatric cardiac surgery program sited in Edmonton. The Western program includes workloads from British Columbia, Saskatchewan, Alberta and now, Manitoba. In England, a public inquiry was conducted between October 1998 and July 2001. The October 2001 report of The Bristol Royal Infirmary Inquiry into the management of the care of children receiving complex cardiac surgical services provided 198 recommendations. Similar to the findings of the Manitoba Inquest, the Bristol Inquiry determined a relationship between low volumes of patients and higher morbidity and mortality rates. The Bristol Inquiry called for the development of “standards that should stipulate the minimum number of procedures which must be performed in a hospital over a given period of time in order to have the best opportunity of achieving good outcomes for children”. The Office of the Chief Coroner of Ontario investigated three deaths associated with the pediatric cardiac surgery program at London Health Sciences Centre (LHSC) and focused on a more detailed analysis of outcomes related to specific complex procedures. The Office of the Chief Coroner's report of November 2001 noted that after considering the factors of low volumes, human and equipment resources, the decision of the LHSC Board of Directors to discontinue pediatric cardiac surgery program was “entirely consistent with international trends in pediatric cardiac surgery where services tend to be centralized rather than decentralized. The decision is also consistent with the recommendations of the Royal Commission in Winnipeg which studied similar issues regarding pediatric cardiac surgery.”
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In January 2002, Canada's Premiers, with the exception of Quebec's, agreed to share human resources and equipment by developing Sites of Excellence for Low Volume Surgery in various fields, such as pediatric cardiac surgery and gamma knife neurosurgery. Quebec will share information and best practices. The Premiers recognized that some procedures are performed infrequently and that the necessary expertise cannot be developed and maintained in each province and territory. They have directed their Health Ministers to develop an action plan for implementation of such sites by August 2002. Research undertaken by Hannan et al (Pediatrics, Volume 101, June 1998) studied 7,169 pediatric cardiac surgery cases between 1992 and 1995. It found that " …even after controlling for patient age and several clinical risk factors in addition to procedure complexity (T)he maximal differentiation in mortality rates between high- and low-volume providers was at 100 procedures annually for hospitals and 75 procedures annually for surgeons. (However), in general, higher hospital volumes and higher surgeon volumes were associated with lower riskadjusted mortality rates across all procedure volumes, so any decision to recommend minimum hospital or surgeon volumes for pediatric cardiac procedures should take into account this fact…". This research has been recently expanded upon in an analysis by Chang and Klitzner of the effect of regionalization on outcomes for children undergoing cardiac surgery (Pediatrics, Volume 109, February 2002). Using a theoretical model, the authors predicted that of the 6592 cases studied "41 deaths could be avoided when all patients from low-volume hospitals were referred, and 83 deaths could be avoided when all patients from low- and medium-volume hospitals were referred to high-volume hospitals". They stated that "surgical mortality rates…became more stable and predictable when the annual case volume was greater than or equal to 170 cases/year" and noted that it has been shown with the adult population, "an economy of scale is achieved at an annual case volume of 200 to 300" and "believe that this conclusion may also apply to pediatric cardiac surgery".
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SECTION VI: TERTIARY PEDIATRIC CARDIAC SURGERY As a first step in reviewing the tertiary pediatric cardiac surgery data subset, the SPSRC reviewed data related to overall tertiary pediatric surgery (i.e., aggregate data that included pediatric cardiac surgery) performed in the province. This allowed the SPRSRC to view any emerging trends in the surgical subspecialty in the context of province-wide surgical activity.
(i)
Data Considerations
For their reviews, both the SPSRC and HSRC relied primarily on the databases available through the Canadian Institute of Health Information (CIHI). The Canadian Institute for Health Information (CIHI) is a national, not-for-profit organization responsible for developing and maintaining the country's comprehensive health information system. Health care organizations, including hospitals, submit facility data to CIHI in order to develop tools to advance Canada's health policies, improve the health of the population, strengthen the health system and assist leaders in the health sector make informed decisions. The HSRC examined "tertiary cases" as defined by Case Mix Group (CMG) and principle procedure, based on a complex and multifaceted algorithm developed by an independent consulting group. Further details of this methodology are presented in Appendix 5. In general, the CMG methodology is designed to aggregate patients with similar clinical and resource utilization characteristics and applies to acute care, inpatient stays only. Specific CMG codes are assigned to cases according to their most responsible diagnosis, complexity of care and age. The neonate age grouping (age 0-28 days) has its own CMG. CMGs are further divided into medical and surgical categories (major clinical categories, or MCCs). If a case is assigned to the medical MCC, a list of diagnosis codes (grouped according to similarities in length of stay and resource requirements) is used to assign the CMG. If a case is assigned to the surgical MCC, a hierarchical list of procedure codes is used to assign the CMG. The procedure codes are defined by the Canadian Classification of Surgical Procedures (CCSP). As an example, in order to be considered a cardiac surgery case, the patient’s most responsible diagnosis must be cardiac surgery. The patient may have a second or third diagnosis as well. The cardiac surgery case could include a number of individual procedures that were carried out during the patient's stay. Consistent with the HSRC, the SPSRC reviewed data with the same parameters in order to build upon the HSRC's work, confirm trending and make recommendations. Notable differences from the HSRC's approach included a review of data over several years, while the HSRC referenced a single year of data (1995/96). Also, the SPSRC reviewed data from two additional age groups, namely the 15 to 18 years age group and the neonate group as well as data for same day surgery. These were not reviewed by the HSRC. The tables provided in this report use 1995/96 as a starting point for review. Where the HSRC data were not available for the additional age groups reviewed by the SPSRC, 1996/97 is the starting point for the review. 15
The reader will note that ranges of data, rather than discrete numbers are used in some of the table and chart presentations. This is in order to comply with the "identity component" in the definition of "personal information", in Section 2 of the Freedom of Information and Protection of Personal Information Act. The Ministry of Health and Long-Term Care Corporate Policy Directive entitled, "Security of Health and Associated Personal Information, Small Cell Count and Residual Disclosure", precludes disclosure of "small cell counts" which is generally regarded as values less than five (5).
Note: The SPSRC was provided with additional reports of cardiac surgery activity collected through the cardiac database maintained by The Hospital for Sick Children. These reports used different reporting parameters by tracking cardiac procedures rather than the national and provincial reporting standard of CMGs. The SPSRC agreed that regardless of the data source and the specific parameters placed on data retrieval, the overall numbers confirm an overall decline in the tertiary pediatric cardiac surgical volumes.
(ii)
Provincial Context
Tertiary Pediatric (In-Patient) Surgery Data were extracted for the pediatric age groups consisting of neonates (i.e., newborns from 0 to 28 days), 0 to 4 years, 5 to 9 years and 10 to 14 years. This data set consists of all tertiary pediatric surgeries including tertiary pediatric cardiac surgery. Tertiary pediatric services occur in a select number of hospitals province-wide including academic health science centres (AHSCs) and larger community hospitals with more specialized concentrations of services. Since 1995/96, the total annual volume of all specialized surgical procedures in the 0 to 14 age group has declined from 6,286 to 5,287 or by 15.9%. Over the same time period, the AHSCs have accounted for an increasing proportion of these procedures. (Please see Figure 1 below and Appendix 5). Between 1996 and 2000, the 0 to 14 population in Ontario remained relatively constant, in contrast to the total population, which grew by almost 5%. The provincial population growth rate is expected to continue to outpace the growth rate in the 0 to 14 age group, which, in fact, will experience a negative growth rate. Between 1999 and 2010, the 0 to 14 population in Ontario is expected to decline by 4.8%, from 2,271,929 to 2,163,736. By contrast, the total provincial population is expected to grow by 13.5% from 11,513,811 to 13,065,586 over the same period.
Figure 1 Percentage of Provincial Tertiary Pediatric Surgical Procedures by age group undertaken by the Academic Health Science Centres (AHSC) All AHSCs Age 0-4 Age 5-9 Age 10-14 Total 0-14 1995/96 83.6% 75.9% 79.6% 80.0% 2000/01 94.0% 89.8% 83.9% 90.6%
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Tertiary Pediatric Cardiac (In-Patient) Surgery Tertiary pediatric cardiac surgery cases account for approximately 12% of the total tertiary pediatric surgical cases. This percentage has remained relatively constant from 1995/96 (11.6%) to 2000/01 (12.1%). Consistent with a decline in overall tertiary pediatric in-patient surgical volumes, tertiary pediatric cardiac surgery has declined from 727 total cases in 1995/96 to 638 total cases in 2000/01 or by 12.2% for the 0 to 14 age group (Please see Figure 2 below). Changes in medical practice, in large part, appear to account for a shift in the percentage of tertiary cardiac cases by the age groups. Looking at the age group 0 to 14 years (excluding neonates) as was the HSRC's focus, in 1995/96, the 0-4 age group accounted for 41.5% of the total tertiary cardiac surgical cases. In 2000/01, the 0 to 4 age group represented 69.0% of the total cases. The data are consistent with the recent change in practice in which multiple interventions are now completed during one operation rather than as a series of separate procedures over time. As well, these procedures are being done in younger children. This likely obviates the need for repeat surgery at later stages in life.
Figure 2 Provincial Tertiary Cardiac Surgery In-Patient Volumes by Age Group Age Group (years) 1995/96 2000/01 cases % cases % 0–4 302 41.5 440 69.0 5–9 253 34.8 89 13.9 10 – 14 172 23.7 109 17.1 Total (0 - 14) 727 100.0 638 100.0 Cardiac Same Day Surgery The SPSRC physician representatives noted the increasing trend toward the use of interventional catheterization in place of cardiac surgery procedures. To review this trend, Same Day Surgery (SDS) volumes from 1996/97 to 2000/01 were collected from the CIHI files and provided to the SPSRC. This data set is based upon CCSP procedures 47.00 to 49.99, which for SDS volumes, is grouped into day patient groupings (DPGs). As the algorithm used to define tertiary cases is based on CMGs, it is not possible to isolate the SDS procedures that are specifically tertiary in nature. This limitation does not allow trends to be accurately tracked, but may explain the higher than expected number of non-AHSC hospitals that have reported SDS cardiac procedures. Provincially, from 1996/97 to 2000/01, same day surgical cardiac cases increased by 16.1% in AHSCs. The increase in SDS cases may in part account for the decline in in-patient tertiary cardiac cases. However due to the data limitations as stated above, it is not possible to confirm the actual direct impact of SDS cases on inpatient tertiary cardiac surgery. From 1996/97 to 2000/01, The Hospital for Sick Children SDS cases increased by 61.8%; London increased by 30.6% and CHEO’s SDS volumes decreased by 37.1%. 17
Figure 3 Same Day Cardiac Surgery Cases for the 0 to 18 Age Group (excl. neonates) Total London Ottawa Toronto Hamilton Kingston All Cardiac CHEO HSC Other Same Day Hospitals Surgery – 0 - 14 yrs. 1996/97 36 70 76
